I started this Blog after being diagnosed with Prostate Cancer in 2010. It was a way of keeping family and friends informed. It then became a campaigning tool helping to make improvements in hospitals nationally. In 2013 we moved to Johannesburg, setting up our own e-education company. Now we have moved to Bangkok, a great base to explore SE Asia. After surgery 7 years ago my PSA remains at zero, the cancer is still undetectable, and I remain thankful.

Blog hits to date

E-mail Daniel

Thursday, 30 December 2010

The end of 2010 approaches and what a year! At the start of this year I thought that my first year at Uni would be a huge challenge, but nothing compared with what I had to face on June 18th.

I didn't want Cancer and if I could, I would give it back. Hopefully I won't see it for a long time to come and maybe never; who knows! The experience brought a clarity to my life that I didn't know possible, and if I could put this in a bottle and sell it, I could make a fortune. Facing the possibility of death when you feel so well, is something that you can only experience; don't even try to imagine it, that won't work. Your priorities suddenley reshuffle, and what you thought seemed important one day, becomes trivial when you look back. Other things that you have always taken for granted slide up to the top of the list, and you become glad that such an event happened, giving you a sort of 'slap' or wake up call.

Happy Birthday to my great brother Andre on 1st January.

We had Chantal, James & Joe, David & Laura at various stages over Christmas and it was great to see them all. Now there's the lull before New Year as everyone rushes out to the shops to stock up on more food, just incase! Northern Ireland has run out of water, I hear on the news. That's a pretty neat trick hey! Have you ever seen it on the map? Yes, Loch Neagh is the largest freshwater lake in the UK and is that big blue puddle right in the middle! It's full, go see, or head over to Fermanagh!

Some countries in the world still don't have clean water available at anytime, so sorry if I don't cry for you Northern Ireland; your problems are small!

I remember one Xmas Eve, seeing the sherry that my mother had left out for Santa, I mixed into it, a cocktail of chemicals from under the kitchen sink. I didn't want to poison Santa, just make him be sick a little so that I could run down and suprise him. The drink was all gone in the morning. I didn't even relate it to my Mother being in bed ill for the next week, or the doctor calling on Boxing Day!

I would like to wish everyone a very Happy New Year and give you a simple message.......Don't waste time. It is so precious, but sometimes we live nearly all of our lives before we realise this.

"Life is short, don't waste time worrying about what people think of you, hold on to the ones that care, in the end they will be the only ones there!"

Wednesday, 22 December 2010

A BIG WELCOME TO ANDREW as a follower of the Blog, a really nice guy who is going through the same process as me just now and who lives a little closer to Addenbrookes than I do! He had surgery the week after me, so it's good for us to compare notes sometimes on our progress.

My histology report back date arrived in the post yesterday, and it has been changed from 7th January to 24th January! That is 8 weeks after the operation, which does seem a remarably long time, considering that all the results are readily available within a fortnite. Why so long? I don't know. I have to guess that if the results were very bad, they wouldn't just leave me sitting here untreated for 8 weeks. So I have to assume that the results are so good that they are not deemed urgent, as any other thinking would just ruin my Christmas.

I've had a good week and the recovery continues well. All wounds just about gone and my body a bit more flexible. Only got up to the toilet twice last night and holding on well during the day also. Coping very well mentally too, but would love to have the pathology side of it out of the way.

John from the support group was around today, what a great guy. We talked about the hospital enquiry, our individual stuff and what we could do to further the local cause over the coming year. Also John has a great contact in Zambia at a National Park, where I am hoping to go for a few weeks this summer; it sounds an amazing place.

Favourite quote from 2010....Well it has to be from a lovely female friend of ours who we will just call J. "You know, we didn't spend all our time just shagging in the 60's, we drank lots too!"

So I have one daughter staying for Christmas...yeeees! First time in 24 years! Now that is a result! Though I did see number 2 and 3 only a few days ago when we exchanged presents and passengers in a freezing service station at Scotch Corner; and just may see number 3 tomorrow now that she can drive!

I may have a little job with McMillan in the new year; unpaid of course, but that's the future. It involves going to schools and talking to children about cancer in general. I get full training and travel costs so I am really hoping that that comes to fruition.

Update on Blog next will be before New Years Eve, but I would just like to say a massive HAPPY CHRISTMAS to everyone. Thank you for all your support through what has sometimes been a terrible 6 months, and thank you for giving me the inner strength to burst into 2011 with renewed enthusiasm.

Below I have copied the full minutes of the NHS enquiry to date. So read no further unless the fine detail is of interest to you. It is still ongoing, but as you will see, great progress so far.

Notes from the 2nd meeting with Mr Daniel Sencier at Penrith Hospital

Friday 17 December 2010

Present:

Mr Daniel Sencier (DS)

Beverley (support) (BP)

Helen Kelly, Head of Governance and Quality (HK)

Sheena Bossche, Complaints Manager & Note taker (SB)

HK made enquiries after DS who had had his catheter removed last week at Addenbrookes and has a further appointment on 24th January 2011 for histology and next stage of treatment.

Since the first meeting on 22 November 2010 Helen Kelly had carried out investigations into the issues and actions arising from that meeting, had spoken with staff in Urology, reviewed the medical notes and produced a timeline from receipt of DS’s referral from the GP into the Cumberland Infirmary, Carlisle

HK went through the time line and noted the times when process had not been robust.

This included;

28 May 2010

– Seen by both Mr Bashir (Consultant Urologist) and Miss Bain (Specialty Locum). Both doctors had written to the referring GP the same day informing of the outcome of the clinic.DS not copied into these letters and GP provided no feedback to DS.

Usually proforma is completed and faxed to the GP prior to the letter. No evidence of this.

ACTION: HK to investigate the copying of the patient into letters to the GP and reinforce the process of communication following clinics.

DS was essentially happy with progress between 18 May and 18 June and felt he was being looked after.

DS stated he was pleased with the actions that had occurred between 5 July and 29 July but he was not aware at the time.

ACTION: HK to raise this with the service lead and review the ongoing communication pathways.

DS added that he received no feedback regarding his MRI scan results and was never informed about the need for a bone scan until the appointment arrived.He had been kept out of the loop adding that it seems his consultant and GP knew what was going on but he didn’t.

Bone scan performed on 12 August

HK explained that during the timeframe of DS’s care 4 – 5 weeks was the recommended waiting time and was a requirement to allow the biopsy tissue area settle.New evidence suggests a timeframe of 3 – 4 weeks.DS said this had not been explained.

13 August 2010 – letter from DS to Mr Bashir- no response received. HK admitted this is unacceptable.

ACTION: HK to investigate further regarding the lack of response

20 August 2010 – HK clarified that DS had been seen by Miss Bain and not a nurse as was suggested in initial meeting.DS said that he was aware of this.Apologies provided for misunderstanding.

DS's notes from the MDT meeting had not been available, and nobody who had been at the meeting was available either, therefore Miss Bain was unable to advise. She had printed out the MRI and biopsy reports but DS said she was effectively reading "blind" and was therefore unsure of options. HK said that the appointment would have been the appointment for DS to obtain his results and options after the MDT meeting. DS confirmed that although he had been given information that the bone scan was clear, no other information from the MDT meeting was available, though Miss Bain could not have been nicer in her attitude and helpfulness, given the situation that she found herself in.

ACTION: HK to review the process for the availability of patients’ notes for clinic appointments

HK confirmed that medical notes for that appointment indicated that there was no evidence of bony metastasis, DS was undecided as to which option but on balance was erring toward surgery.Further written information had been provided to DS regarding the options and he had requested further discussions with the Freeman Hospital surgical team and the Oncology department at NCUH regarding his options.NCUHT informed the GP of this and copied the letter to Dr Sidek (NCUHT) and Mr Soomaro at Freeman Hospital as the means of referral

15 September 2010 –DS’s letter to Mr Bashir of 13 August 2010 arrived in the PALS office. HK could find no explanation as to why there had been a month’s delay in this being received.Issues discussed within the timeline regarding PALS.

23 September 2010 – Letter received from Mr Piez at Freeman stating DS had decided he wanted robotic prostatectomy at Addenbrookes – cc Mr UE.DS wasn’t even aware of Mr Soomaro – HK explained that letters are always written to an individual within a department as better address to someone that just a department, that way someone would receive and pass on to a more appropriate consultant colleague.

24 September 2010 - DS had appointment with Dr Sidek but wasn’t aware she was the oncologist until the end of the session when he asked her who she was.

ACTION: HK to feedback this to Dr Sidek and the importance of introductions at the start of a consultation.

During the investigation HK had spoken to Mr Umez-Eronini (Consultant Urologist).He had been on leave at the time of DS’s decision to be treated at Addenbrookes but had made the referral to Professor Neal immediately on his return.

7 October 2010 – Professor Neal accepted referral and copied DS and GP into the acceptance. HK noted this as good practice

8 October 2010 – Original sample slides sent to Addenbrookes.

11 October 2010 – Samples reviewed.Addenbrookes report stated “These findings are essentially in agreement with the original report”.

DS stated Addenbrookes said differently to him – that he had a Gleason 8 cancer and not a Gleason 7 (there is a fundamental different between a 7 and an 8).HK had spoken with Mr Umez-Eronini and in simplistic terms had explained that samples were taken from different sides of the prostate. Some areas were 3 or 4 with traces of 5 and when added NCUH had obtained a Gleason 7.Apparently this is however subjective around the country.Either way consultants always went with the higher.DS explained that a G5 or less isn’t treated.8 is the bottom end of “high”.

ACTION: HK to speak to Mr Umez-Eronini and feed back this information.

Discussion took place between HK and DS about the sharing of information with patients about the level of detail regarding their condition and that some wish to know every detail why others prefer to know nothing.

DS stated that the MRI report from NCUH states the disease was clearly contained within the gland, but Addenbrookes have stated it had grown around the surface.

ACTION: HK to review the report.

18 October 2010 – MDT Addenbrookes – robotic clinic review 2 weeks.

19 October 2010 – PALS officer rang DS at 13:58 with no reply and again at 15:40.DS said he had a message facility and no messages had been left.HK explained that often, given the nature of some cases, no details will be left as staff don’t know who will pick up the message.

22 October 2010 – PALS officer had made a courtesy call to DS at 16:35 and this is what her records showed.DS said this was after 21:00 hours at night.PALS officer had informed HK that she would never be working at that time in the evening.HK asked DS if the information provided in the timeline was accurate DS confirmed as correct, although he had received so many leaflets he couldn’t recall.

ACTION: HK to obtain further details from the PALS officer.

DS indicated that he did not want to make much of this at all.

Email issue – DS not receiving responses to e-mail and being told staff are not permitted to use e-mail as a form of communication.HK had spoken with IT department who said there is a risk to sending information outside of the internal NHS network as it was not a secure route. There is the potential for email to arrive at the wrong place.

ACTION: HK to investigate further regarding the available communication channels.

BP indicated that it was good to see that things (timeline) indicated that matters were in motion during DS’s involvement with NCUH but a pity this wasn’t known until December 2010.

HK enquired if DS had known all along what had been occurring would that have made a difference.DS replied yes definitely it would have provided him with a lot of reassurance.However he would have liked his MRI scan results earlier.

Regarding the issue of the 5 week delay in his GP practice referring to Addenbrookes (DS now understood that the referral was in fact made by NCUH and not by GP practice) he had contacted Jenn Carroll, Acting Complaints Manager (PCT) not as a complaint but for explanation.

Regarding the perceived named contact for patients HK stated that within Breast Care the Specialist Nurse provided the initial point of contact and suggested that a similar system for Urology. DS indicated that at Addenbrookes the nurse provided her personal work mobile number and accepted emails from patients.Patients were also send copies of the details letters written about them and Mr Shar had also telephoned him at home.

ACTION: HK to discuss this with the urology specialist nurses.

HK enquired whether she had addressed and answered all of DS’s issues for him. DS felt that they had been.

Issues from the previous meeting on 22 November 2010:

·PALS issue

ACTION: HK to attend support group in February 2011.

·MDT meeting – complete

·Named person for treatment – urology nurse is the 1st point of contact

ACTION: HK to discuss this with the specialist nurses and make recommendations regarding communication.

·Access to medical records – complete informed of the process on 13/12/2010

·Referral time in relation to Newcastle – complete

·Lost notes for clinic appointment on 20 August 2010

ACTION: HK to review the process for the availability of patients’ notes for clinic appointments

·5 week delay in referral to Addenbrookes by the GP

ACTION: DS to contact PCT regarding this, details given

HK asked, apart from agreed actions what would DS like to see happen now.

DS said to make things better for next cancer person.HK suggested this had probably wider ramification and should be universal through all services within the Trust, not just with prostate cancer.

It was agreed that the main issues was the lack of communication.

HK said indicated that she has a plan for the increased provision of the PALS which will be implemented early January 2011

DS would like Urology answer machines at NCUHT to have longer tapes to leave telephone messages so there is less likelihood of them running out.

DS had provided HK with a protocol from Addenbrookes HK had shared this with the Urology team at NCUHT and confirmed NCUHT has a similar document.

The Chairman of DS’s self-help group had indicated HK would be welcome at one of the meetings.It was agreed that John McCarthy would contact HK with available dates and times and for her to attend the meeting in February 2011.

HK summarised that today was a progress meeting there were still outstanding actions.She agreed to contact DS during the week beginning 10 January 2011 with an update on the actions.HK said she could meet as long as he needed to.DS said that is would be nice to draw some conclusion.He and his partner were doing this to effect change.

REPORTING AND LESSONS LEARNED

HK explained Care Quality Commission (CQC) had been informed of this case and with DS’s permission she would like to share the outcomes with the local assessor. DS agreed to this.

HK informed DS that the outcome of this meeting will be reported through the usual channels within the Trust.

Saturday, 18 December 2010

Oh how good it was being back at Uni on Thursday; my first day back but the last day of term. I got such a nice welcome from everyone and have made some lovely friends in such a short space of time. It made me realise how hard it will be in two and a half years to say goodbye to everyone! I handed in my photography assignment (thanks for your support Martin & Paul), so now I only have to catch up on Ecology, Biodiversity & Expedition Planning!!

Yesterday, we went to meet with Helen Kelly, from the local Primary Care Trust, who has been investigating my concerns over the local hospital's handling of my treatment. All credit to her, no whitewash! She dealt with each point in turn, admitting that there had been several mistakes, unnesecarry delays and very poor communication on the part of the hospital. She has promised change and wants to involve me in the process. She has also offered to come and explain those changes to our local support group meeting in February. I came away happy with her reponse and attitude, knowing that if she does stick to her word, there is a better deal awaiting future prostate cancer patients in Cumbria. I now just have to go through the same process at my doctors to find out why there was long delays there also. The main thing that surprised me was, that my doctor was kept well informed of my progress by the hospital, but I, the patient, wasn't!!! My doctor certainly didn't keep me up to date with what was going on!

In response to some questions, here is just a little more detail on what I can expect when recieving my feedback of histology on 7th January.
There is statistically, a 15% chance that this cancer has spread to my lymph system. That means there's an 85% chance that it hasn't! I'll take those odds, wouldn't you? I just need to be lucky. A spread to the lymphs is a journey down a long road of progression that I would prefer to not to travel, but for which there are marvelous treatments now, which can hold things back for years. No spread to the lymphs could mean that radiotherapy would be able to mop up any rogue cells left on the site after surgery, and carries with it the possibility of a complete cure. However, 46% of people will experience the return of the disease locally somewhere within a ten year period, but I will be in the 54% who don't; I've decided!

Great progress physically this last week. Still hard to sit down without a soft cushion, but generally dry, though I did discover that sneezing can have its problems!! I've discarded the 'deep vein thrombosis' stockings a week early, my god how I hated them! Had 2 pints of Guinness mid week which made the night time a little damp. but not too alarming! Then on Friday we had a great night out with Cherry & Kim and I made the mistake of drinking Guinness all night. Well I was in the toilet so often that the landlord must have thought I was dealing drugs! Had I had my toolbox with me I would have plumbed myself into the nearest radiator! Maybe I will become a wine drinker at the pub, I just can't do 'quantity' drinking anymore!

I think back to my Dad dying of this terrible disease and how much help is availble now that was simply not on the menu then. Both my brothers are active now in watching for any symptoms and I would still like to shout out to ANYONE who is reading this blog, as I have many times ............
ASK ANY MAN YOU KNOW AGED 50 OR OVER WHO YOU CARE ABOUT, WHAT HIS PSA LEVEL IS. IF HE DOESN'T KNOW, TELL HIM TO GO SEE HIS DOCTOR FOR A SIMPLE BLOOD TEST AND WITHIN A WEEK HE WILL KNOW. YOU COULD SAVE HIS LIFE - DON'T LET HIM LAUGH IT OFF!
30,000 men a year are diagnosed with prostate cancer, 10,000 die from it, YOU can make a difference to someone. Caught early, the chances of a complete cure are very real, and wouldn't that be better as a Christmas present than what's on your list right now?

Many of you have asked how this situation came about......
Well, the dinosaur lives in a cave just above Lake Ullswater, a closely guarded secret and very few people apart from local farmers have ever seen it. To try and lure him out of the cave for my wildlife photgraphy assignment, I used myself as bait, hanging from the tree pretending to be a chimpanzee, his favourite food; which are also rare in the Lake District! It all went wrong when the replica cow showed up beside the wall, the dinosaur seemed terrified of it! Just after the photo (on auto shutter) was taken, I fell onto the startled cow, who then ran back down the field, trampling two tourists and a national grid inspector along the way. The dinosaur gave chase, but everytime the replica cow turned, and stared back at it, he froze in terror, seemingly haunted by the large scary eyes of the fake cow. I passed out after falling off the cow and flying head first into a badger set. When paramedics arrived and I told my story and tried to explain away the three dead badgers, but was detained under the mental health act for 28 days. The replica cow and dinosaur? Vanished! Not even footprints! How is that possible? I am still trying to trace the pilot of the light plane hovering overhead at the time, perhaps the only witness to this unlikely event.

We have a 'German Market' in Penrith right now, not that I noticed many Germans, but definately a European flavour to it with some great meats, cheeses and other foods. A real Christmas feel with the roads again, white with crispy snow, as I helped Beverley to hand deliver her Christmas cards. She says it's more personal, but I know Yorkshire folk, and if there is one thing they hate, it is spending money when they don't have to :-) That said, she is the most generous and caring person that I have ever met.

Saturday, 11 December 2010

What a great week! Well I can say that now, but I wasn't really looking forward to it! Mid week I had the privilege of videoing a school's nativity play and it was just fabulous. I like photographing wildlife but you just can't get better for surprises than young children. 3 to 6 year old boys and girls who did an 'alien' take on Christmas when a spaceship landed near the school. My favourite part had to be when the cord attached to the spaceship got tangled up, and at first it couldn't land, then finally plummeted to earth with a good crack onto the hall floor as the kids roared with laughter!

We left Penrith about 2pm on Thursday, arriving down in Cambridge at 7pm. Stayed in the same place, a Premier Inn owned by Whitbread who I used to work for. I had the fish & chips for dinner; I think it was the 'hand battered' that attracted me, after all, fish is fish isn't it? Well no! This fish really did melt in my mouth, I could have poured it off the plate and drank it had I wanted a fish-shake! I asked the waitress if it was Cod, Haddock, Coley or maybe some lesser known fish from the north sea? She said it was hidteyrhftg! Well it sounded like that! A Vietnamese species that was, apparently becoming very popular in the UK! I think not! I suspect that these fish are being bought for less than a penny each, from some tiny fishing port near Quang Ngai, probably starving the local population as a result, and then being shipped to the UK to be sold as 'fish', for 500 times it's cost. Well it's no surprise from a company who gets it's chickens from Thailand and Beef from Argentina, then asks you to keep your towels on the rail, so that they can be used again; because they are so concerned about what detergent will do to the environment!

I'm not sure what I was expecting when having my Catheter removed, after all, if there is one place that a guy might be scared to have a stick stuck into, it's not his eye! It was a soft flexible tube and I had become rather used to it. I could sleep all night without getting up to go to the toilet and watch TV all evening, having as many glasses of wine as I liked, with just an occasional feel to check the leg bag perched warmly on the side of my leg. With temperatures of -17 outside last week, going out was treacherous as there was still heavy snow on the ground, but the thought of the tap on the bag freezing over was also prominent in my mind! Driving was easy as one only had to stretch a leg from the car to achieve relief. You could say that I became lazy and yes, I got used to it.

So laying down on the bed, as the nurse told me to take a deep breath, saying "this won't hurt at all, it will just feel a little uncomfortable", didn't work for me. I was convinced that she was going to pull a train out of my now, terrified shrunken Penis, as I screamed until eventually passing out. Nothing of the sort! It was almost pleasant, but having said that, I wasn't going to ask for seconds and I felt such a relief that it was out...pheeewww!

I then had to pace the corridors of Addenbrookes drinking water for 3 hours just to make sure that all this liquid was not coming out through any other than the intended hole. All in order, we set off back for Cumbria with a good supply of towels in the car boot. The next problem came when we became stuck in a 3 mile tailback on the A14. The traffic was not moving, but the litre of water I had taken in the past hour certainly was, and gathering fast in my bladder. Pain started to build, but nothing like the pain I was about to experience ten minutes later as I started to sweat and go very pail. I had to go and it didn't matter where, it was happening now! I flung the car door open and with traffic stationery in all 3 lanes, I pulled my pants down and just let it go. Yes, I could have been arrested and yes, the other motorists thought I was disgusting, but you know.....I didn't give a shit! The relief was ecstatically unbelievable and I can't ever remember feeling relief such as that. The rest of the journey was mainly uneventful and I even drove the last leg back into Cumbria. Where had all that snow gone in just a day?

My first night was completely dry, though I did have to get up every two hours as my bladder had shrunk to the size of golf ball. The day so far has been good with just an occasional small dribble, but well within expectations at this stage. In some cases, incontinence can be unbelievably bad!!!!

Pelvic floor exercises continue now and I must start doing some serious walking to get a bit of fitness back. I have put a letter of 'extenuating circumstances' in at the University, which they will take into account when judging and marking my first year.

Next BIG date? It's on 7th January when I go back for my Histology.
Best case scenario is that they have got everything and there is no need for radiotherapy.
But because I know it was a Gleason 8, all be it with a relatively low PSA, I think it more likely that I will need radiotherapy, but will be over the moon if there has been no spread to the lymph nodes. All I can do is wait, hope and enjoy Christmas.

Next BLOG next weekend my friends, hope you all survive the shops!!!!!

Friday, 3 December 2010

It's just 9 days ago when I was 2 hours into my surgery at Addenbrookes and I am doing well! I haven't been able to go outside because of the snow, slipping over is just not an option. Besides, passers by wouldn't know whether to call a plumber or an ambulance the way I am just now! Shame, because I love a good snowball fight and whizzing along the ice covered footpaths at this time of year. Submiting my assignement photographs is a challenge and I just keep my camera at the ready for anything I can see through any window. I'm suprised that the neighbours haven't called the police yet, I would have!

Beverley sang Happy Birthday to me this morning as she gave me my present and 4 cards. I waited to see if the postman would show up with more :-) but he didn't even visit the street today. Walking through the 3cm drifts was probably an over ask, as our postman is only 2cm high. Well it's true about the drifts! Still, when I looked at Facebook I gasped, a whole line of 'Happy Birthdays' strung down the screen. Add that to the phone ringing so much that it was 2pm before I could shower and it made my day.

My daughter Sasha has been here all week and that has been great fun; valuable father/daughter time that we probably wouldn't have had were it not for the circumstances. We have a great relationship which involves taking the piss out of each other most of the time but in a 'good fun' sort of way. I am sitting in my t shirt right now because I am used to the Cumbrian weather, but even though she was brought up in Glasgow, now living in London, she finds the need to wear gloves around the house even though the central heating is on! It is so good that she is here though as apart from my friends Paul and John, I haven't seen anyone else! Beverley is back at work, with all that entails in a school at Christmas, but she loves it and it's her life, that's why she is so good at it. On Thursday she got the day off because of the snow and it looks like I am missing very little at Uni as lectures and outings are cancelled day after day. You know, in the 60's when it snowed, nothing was ever cancelled. People went to work, we all went to school and the trains and buses kept going. Why is that? Accross the road from me, the NHS admin building is empty! Why? All the roads are open! I just see a failing country with some weak people who look for the tiniest excuse to do nothing and then justify it under Health & Safety regulations. On the up side there are still those to who the snow will make no difference, they will even go out and enjoy it, realising what a bit of natures magic has just fallen from the sky.

My wounds are all healing well but I still look like I have been beaten up and suffered multiple body stabbings. As if I had just been out for an average night on the town in Carlisle, you might say! You wouldn't know it to see me walking around, but I am still at a very slow pace. The 'plumbing' is all working and even the temporary plumbing has grown on me; though it will be nice to have it all removed next Thursday. Did you know that when you have abdominal surgery, they blow your body up with compressed gas so that they can manouvre all the cameras and surgical instruments around inside you. You gradually deflate in the days afetr the surgery, after all, if they let you down in one go, you would probably take off at speed, flying around the operating theatre causing all sorts of damage! So in the first few days after surgery you look like well toned body builder, all be it a pregnant one. But if you tried to drown yourself you couldn't even fight your way under the water without bobbing to the surface like a cork! After day four you really start to ache as the gas slowly leaves every part of your system, and standing by an open fire just wouldn't be advisable! All my gas has gone now and I feel kind of heavy again, deflated would be the wrong word but I can see my bones at last!

A really nice guy from the British Legion paid a visit yesterday. Because I am an ex soldier, he has told me that the British Legion are going to not only pay for my travel up and down to Addenbrookes, but also for my food and accommodation while I am undergoing radiotherapy. Isn't that brilliant? Of course if I manage to secure any other forms of help I will return any unused money to them, but it takes a huge pressure off me financially right now. When you give money on Poppy Day, you always associate it with war. I do, don't you? But ex servicemen get help from that fund, £28 million last year, for all sorts of other problems, and I guess I will be putting notes rather than coins in those collection boxes next year.

Had loads of messages from friends at Uni asking how I am and when I'll be back. I am hoping to go in next week to say hello at least, and perhaps to meet up with some tutors to make a few 'catch up' plans. Can't wait to get back for a while before I'm off for the longer stay for radiotherapy down in Cambridge.

I wrote out all my Christmas cards this week, an event that I always find interesting in the way that my thoughts towards people change over the years. You know when you say to someone "that's you crossed off my Christmas card list"? Well in reality, we do that every year; along with adding some people on. This year I have gone for the 'one card suits all' approach. So everyone gets the same card, personalised with a little festive message, like...'Happy Christmas'! There was a time when my address book was so big that this whole process could take several days. But now, most of my contacts are either on email, Facebook or on my phone; I don't even know their address! So total amount of cards this year numbered less than 20 and I'l probably hand out another 20 myself as the occasion arrises. Had lovely get well cards from Karen & David and David & Laura, and birthday cards from Beverley, my brother Andre, Lucienne, Chantal and Sasha.

More student protests all over the country yesterday, isn't it great? I thought apathy had set in amongst this younger population in recent years but it's great seeing some action taking place now. They shouldn't have to go through life trying to shrug off this huge debt! The people changing the law now don't care, they have had their free University education and they certainly can all afford to comfortably buy their children the same. Things will only change if these protests are kept active and not 'peaceful'. Don't get me wrong in this. I don't condone injuring anyone, but property is fair game. Peaceful protest never won anything, ever. If the suffragettes had made 'peaceful protests, women would still not have the vote. If the 'Poll Tax Riots' had been the 'Poll Tax Peace Marches', we would be all paying Poll Tax now. The Banks and corrupt politicians brought about the situation in this country where there is now a need for radical adjustment to the countries finances; including the raising of tuition fees. Marching past a bank, with a banner stating 'scrap fees', even if you did it for 500 years, would change nothing. Going into that same bank on mass and destroying it would certainly bring results, whilst removing the smiles of the people who caused the situation in the first place. The unfortunate people in between are the Police, who are essentially one of us, and I do think it imoportant not to harm them.

Made the front page of the local paper this week, take a look.....

I said to the photographer, "can't I smile?". He said, "you've got cancer, the readers wouldn't expect you to be smiling, they will expect you to be devastated." I argued with him but lost. So take it from me, I can assure you that I am very happy in that photo.

I am going to take this all the way because there are so many 'invisible' people out there who would just sit back and die rather than hold their hand up. Usually because they are too old and frail, very ill or simply don't want to make a fuss; we can't let a system like this ignore our needs when the top executives in these trusts earn more in a month than most of us will in 2 years; not including their 'bonus' of course. What is a 'bonus'? Have you ever had one? I spent most of my life thinking it was a 'bonus' having a job! Why are only the highest earners in society, the only people who are unhappy if they don't get a 'bonus', when the rest of us just accept that our bonus is having a job? I think it will be a 'bonus' if I haven't got cancer now, and I will never hope for any other bonus ever!

My favourite part of the week had to be when Sasha drove me down to Beverley's school and we sat and watched the 3 to 5 year old's Nativity play rehersal. If you need lifting, this can not fail! It's the bits that go wrong in those plays that 'steal the show', and that's plenty; just about constant you might argue. The kids were loving it and already knew the songs off by heart, and each little smiling face, with it's own blossoming personality, still blissfully unaware that a life of adventure stretches before them.

Had lovely calls from Chantal, Lucienne and Sasha today, Oh and my brother Paul and Mother, just to brighten up a day that looks magic enough outside, as the snow continues to float down, making one feel how good it is to be alive.

Next Blog will be on the weekend next week, because on Thursday, I return to Addenbrookes to have my catheter removed early on Friday 10th. Oh, how lovely it will be to roll over in bed again. But on the downside, I will have to get up to go to the toilet at night!!!

Saturday, 27 November 2010

A blissful feeling as I sit here at home on a Saturday afternoon, watching the football, thinking back to Tuesday morning as we set off on our journey to Addenbrookes. How could so much have changed in just 5 days! If any of these events seem a little muddled, it's because my head is still that way.

The journey down took about 5 hours and you can imagine what we talked about most of the time. We had no idea when we would be coming back, but Thursday at 5pm was the plan if all went well. We checked into the hotel and then went to look at a few of the places that had been offered for our stay during Jan/Feb when I have Radiotherapy. They were all very nice, but one in particular, a cottage on a village green with a duck pond and stream flowing past, seemed idilic. After checking these places out we went back to the hotel, got changed and went for a lovely meal at the Oak Bistro. We jokingly referred to it as our 'last supper', but there was a chill to the thought! I had the artichoke soup followed by Swordfish, it was delicious washed down with a shared bottle of red. Couldn't overdo the alcohol before this event! "Would I like a dessert?" the waiter asked. The Blackberry and Apple Crumble with custard looked hot favourite, but no, hold on, the custard would break my 'dairy free diet'! Sod it, I would have this favourite of mine, after all, it could be my last!

We had a lovely evening, laughing and joking most of the time, well what else could we do? It was a bitterly cold night and as we drove back to the hotel, there was a feeling that the fun was over. I took some diazepam and Beverley some stuff to make her sleep, but there was probably nothing that was going to make it happen, and we had a very restless night.

The alarm went at 5am, this was it, reality kicked in. I could have nothing to eat or drink after midnight, so even a cup of tea was not available as a welcome to this day. I flushed down my antacid tablets which would stop the acid from my stomach burning my throat when they put me on a tilt during surgery. The funniest bit was yet to come though. I had to push two suppositories up my bum as far as I could. After 30 minutes I was assured that everything in my body would hit the floor, so to make sure I was hanging over a toilet bowl. I was provided with latex gloves (yes, for both hands!) so assumed that this would make it easy; not a chance! I couldn't get them past the entrance; there was simply no lubrication as I forced my finger further up, wondering if I had actually found the hole! Eventually, with a bit of spit, twisting and turning, I decided that I had gone as far as I was going to and gave up with the capsules barely inside.

We left the hotel with plenty of time to spare, arriving nearly half an hour early. 6.45am but the hospital was buzzing, staff and patients scurrying everywhere. By 7am I was called in and by 8am I had been introduced to my Anaesthetist, a lovely Aussie woman who really cheered us all up. She explained that her face would be the last I would see as I went to sleep, and the first to see when I woke up. She was right about the first thing, but I never remember seeing her again. She asked me to confirm my name, and I replied, "I refuse to reveal my identity". She smiled.....and I was gone.

Surgery was planned at about 2 to 3 hours, however I was over 6 hours in Theatre. Beverley was frantic with worry as all friends and relatives were trying to get news from her. It transpired that they had problems reattaching my bladder to my urethra, which will now mean my Catheter staying in an extra week. I woke up in the recovery room which I have very little memory of, other than how nice and kind everyone seemed to be. Back on the ward I have little memory of that night, again, other than how nice all the nurses were, and how all the patients were trying to help each other through what were uncertain times. A male Urology ward is not a place for the feint hearted. Nobody really cares about how they walk around or what is hanging out, it's just accepted! I can't speak highly enough about all the people I met in my 2 days at Addenbrookes, and I know that even though I am at home now, they will be still doing it all again for someone else right now.

If you are having, or know someone who is having this surgery shortly, I really don't mind if you contact me to speak in more detail about it. It may help to calm some of your fears, as the whole procedure and recovery are remarkable.

At 6pm on Thursday we headed up to Grantham, to stay the night as part of our two stage journey home. A good idea because doing the 250 mile in one go would have been impossible. A bit of a panic on the Thursday after arriving in Grantham, the collection bag started to look very red and was filling with a larger amount of blood. After phoning the hospital I was told to 'jig around a bit' and try and clear the blockage by conventional plumbing means. To our relief this worked and it was such a beautiful site to see the bag becoming clear again as urine flowed freely through.

The remainder of the trip back to Penrith was a breeze, with plenty of pillows around me, Beverley's (almost) gentle driving, and those lovely painkillers! Still not passed anything solid since Wednesday morning, but occasional gas and taking laxatives twice a day, should soon see results. Beverley still has to give me an injection of a anti-blood clotting agent daily, and I have to wear those lovely surgical stockings for a few weeks yet, but roll on 10th when the Catheter comes out. Wishing for a 'dry' xmas could be more relevant than a 'white' one!

What next?.....The Blog will continue, weekly for now as there is still a journey to be had and work to be done in helping others. I made it onto the front page of the local paper today, because of the ongoing enquiry by the NHS into my 4 month wait locally before any treatment started. It is important to follow this through because nobody should have to go through the stress that I have been forced through since June. Luckily, the blog itself provides a great record of evidence on all that has occurred since that time.

In 6 weeks time, I go back to Addenbrookes hoping that the good news will be that there has been no trace of a spread to my lymph nodes. If there has, then the treatment goes off in a different direction again, but thankfully, there are still treatment options. All being well, this spread will not have taken place, and I will just have radiotherapy on the 'prostate bed', the operation site, which will last 33 days. My PSA will be measured every 3 months for the rest of my life, and while PSA levels remain below 0.05, I will be assumed to be cancer free!

Beverley has just been fantastic throughout all of this. She couldn't have looked after me better in anyway. She was very loving and sympathetic when needed, but also knew when to give me a good bollocking and kick up the arse. Getting through this without her would have been a big ask; she is a very special person.

Monday, 22 November 2010

Oh OK maybe one last Blog before I travel tomorrow. I have been overwhelmed by the amount of people who have sent me their best wishes, both in person and by other media. I try and imagine what it would be like without all this support and it would feel like a very lonely place. I can't reply to everyone because there is still so much to do today. I've got a couple of big baggy trackie bottoms for comfortable wear after the operation, but just realised I haven't got any trainers to go with them. You wouldn't wear shoes would you? I've also got a meeting with the 'Risk Manager' of the NHS Trust locally at 4.30pm then a press phone call session after that.

I tried bidding on E Bay for the first time last night. I was allowed to bid in £10 amounts but is it all a fix? Thinking I had won the bidding and with two seconds to go, I was pipped by someone who bid some crazy number like £5.27. How is that possible; anyone know? There I was thinking I had got my 500mm lens for £530.00 :-(

Here's a few more photos ...............

All I did to get those seagulls was buy a bag of chips and Beverley just kept throwing them up in the air! The chips that is!!

You won't be able to reach me by phone between 7am Wednesday morning and 5pm Thursday night, but call Beverley for the latest news. I hope to be able to do a Blog by Friday so will catch you up on the news then. Best wishes to everyone..............

Friday, 19 November 2010

Yes OK, I said my next posting would be after the surgery on Wednesday but this has been an eventful day. I have had a visit from John who is the Chairman of the Cumbrian Prostate Cancer support group. Such a fantastically nice guy, it was a pleasure to meet someone else who lives with this and actively fights it in every way possible. We talked for ages about our individual circumstances and I am going to talk to the rest of the group when I am well enough.
John lived in South Africa most of his life and when I told him about my Wildlife & Media degree, he told me that his brother runs the Kafue Wildlife Park in Zambia, the second largest in the world; it's the size of Wales! I have put a link to it below, but I think I know where I am going for my University Expedition next year!

Oh and on that note...If you know anybody who has a 500mm telephoto adjustable lens with optical stabiliser, that would fit my Sony 350; and that they either don't want or can lend me for a year, please shout!

The story in the newspapers is on hold because the local health body have threatened legal action if they publish, saying that my account of events is not accurate. They are of course! But after numerous calls between the NHS, the press and the Cancer Support Charity, I have agreed a meeting with the NHS trust representatives in Penrith on Monday. The papers will hold off until after this meeting, but I really think it is in the public interest for this to go out, don't you? Diagnosed with aggressive prostate cancer and 5 months later having had no treatment is not acceptable to me. It doesn't help me now, but it might save the skin of someone in the future.

Claire, my Urology Nurse from Addenbrookes called today and I had a list of questions for her.

I arrive at 7a.m. and if I am first down it will be at 8a.m. No hanging around there! Surgery will be about 2-3 hours. If I am second down it will be early afternoon, but regardless of when, I won't remember much of the rest of the day, she assured me! I will be discharged around 5p.m. the day after, so might stay locally that night. I go back ten days later for the removal of the catheter, which she also assured me that she is very good at, having done it countless times...Ouch! 6 weeks later I go back for the meeting where they tell me the histology news. Has it spread to the lymph nodes, the seminal vessels etc. What is the final Gleason score; though 8 is bad enough right now, it's better than 9 or 10. First PSA test is 3 months after the operation and that needs to come out at less than 0.05 if there are no cancer cells still growing. Radiotherapy will follow on from that, so might not be until mid January ish! Also I will get no pre-med and not allowed my phone on the ward...cool!

So that's it for now, and I hope to catch you up on the latest as soon as I possibly can........

Thursday, 18 November 2010

AT LAST! Wednesday 24th November is my date! I got the news on Wednesday evening by phone from the urology Nurse at Addenbrookes. For the first hour I was scared as hell, but it has sunk in now. I have to be at the hospital at 7 a.m. However I have to be up at 5 a.m. to stick 2 suppositories up my bum, which will clean me out, I am assured! I also take something to neutralise the acid in my stomach because for much of the two hour surgery, my head will be lower down than my stomach! I have also got some diazepam to keep me chilled before the event.

The success of the operation will be measured by the skill of the surgeon on the day and the result of the pathology a few weeks later. How far it has spread will make a big difference. My MRI scan showed a small spread onto the prostate surface, but my bone scan was clear. They are removing some lymph nodes in the groin area and if they show no cancer it will be an absolute bonus.

I remember the quote I found some months ago on line, and it reassures me now...

'Prostate Cancer' is not a sudden visit from the Grim Reaper, more of a long slow waltz with the Angel Of Death!

I have just sent an email to my fellow students who are a fantastic bunch of people, but I wanted them to know first hand what was going on. I am determined to be there when they all graduate in 3 years time, and I will be.

Had a great weekend, last week in Whitby, the best fish and chips I have ever had! Beverley will never forget the seagull who just dived into her fish and chip packet and made off with the fish. I saw it as a skilled and well planned stealth attack, by a simple bird on a well evolved human; but she worded it differently!

We have been experimenting with Soy milk for the last few days as I am now 'dairy free'. There are many brands and unlike milk, taste very different from each other. Tesco's own bran of unsweetened is favourite so far. It not only tastes OK in tea and coffee, but it doesn't leave that brown stain on the cup and on your teeth as you drink. I've had my last milk but it's not that easy. Milk is hidden in so many things and it's not easy to avoid. Flora contains milk, but I didn't know that until yesterday. We have tried Soya cheese but it's not cheese as you know it! It's a lifestyle change, it won't be easy and I am so grateful to Beverley for buying into this, because unlike me, she has a choice.

Thank you so much to all the people who are getting involved with the Prostate Cancer Charity and growing a moustache for 'Movember'. David, Tom, Richard, Sasha (not growing :-) and the many others that I just can't remember the names of, well done all of you.

Let's have the Story so far, on the medical side for anyone looking in for the first time.

May 18th After rectal examination by Dr Lukose and PSA 4.2 referred to Consultant, Mr Bashir.

May 28th Saw Mr Bashir, had biopsy same day.

June 18th Saw Mr Bashir confirmed Prostate Cancer

Gleason 7 (4+3) with one sample at grade 5 (highest).

July 5th Had MRI …told result available in 10 days!!

Hospital ‘forgot’ to give me the result.

Repeated phone calls to all contact numbers ignored.

E Mails also ignored. Complained to PALS, no reply

Aug 6th Frantic with worry, obtained result over the phone

via McMillan Nurse, from Urology Nurse. Both of who were very helpful.

Tumors confined to prostate capsule, no other detail.

Aug 12th Had bone scan. Very worried by comments made during this by Radiologist.

Aug 20th Consultants appointment after MDT meeting.

My notes were missing. No details from MRI as to position or size of tumors. Consultant unavailable. Brief details on A4 sheet given by Doctor. Bone scan clear. Nobody available who was on the MDT.

Letter being sent to Newcastle Freemans to request

seeing Surgeon and Oncologist to discuss options.

Also told that the main guy at Newcastle who did this surgery had moved to Dublin!

Aug 24th Mel, the Macmillan Nurse called and gave me my first detailed report on my MDT meeting and MRI scan done on 5th July.

Aug 25th Saw Dr Lewis, gave her a letter on what had happened to me so far, asked for a referral to Addenbrookes

Sep 7th Saw Dr Sidek, she explained radiotherapy, I decided against it. Dr Sidek couldn’t show me a clear MRI scan as the equipment seemed faulty. Reception in Radiotherapy were very unfriendly and inattentive.

Sep 8th Saw Dr Lewis again to ask for the referral to go ahead as I had decided against radiotherapy.

Told I would be given a date for surgery before month end. A very positive experience, seemed a well run and very organized hospital.

Nov 17th Date for surgery given as 24th November.

I took this at Whitby last weekend. It was very cold but this lad was having too much fun to notice!

When he came ashore I showed him the photos and he asked if I could send him them. It gave me an idea for some tax free income in the future. Just need to get some cards made up with my e mail address on and go out shooting people having fun!

This little chap is called a 'Turnstone'. I only know that because there's a really nice young lad at Uni called Ashley who knows just about everything to do with wild birds. Well worth knowing on this course.

My next post will hopefully be next weekend now, when if all goes to plan, I will be recovering at home feeling a bit sore but glad to have that bit out of the way. If I can't write it then Beverley may step in as a guest Blogger to keep you updated. Go easy on her :-)

A message to my children.......

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

Friday, 12 November 2010

It's only Wednesday just now, but I have to start writing this before my head explodes! I still have no appointment date for surgery, but it's out there creeping towards me. The other guy who I met at Addenbrookes, Andrew, was due to have surgery on 16th, but they have put him back to the 30th now.

I have written letters to both local papers this week because regardless, I want to try and make a difference to any man in Cumbria, who is ever given the same news that I had back in June. The more contact I have with Addenbrookes and talking to other Prostate Cancer patients around the country, the more I realise just how 'third world' our service is at Carlisle.

Knowing I would be having radiotherapy for about six weeks in January/February, I wrote a letter to the Cambridge News last week, explaining my circumstances and the impending cost of a hotel for 6 weeks. I was absolutely stunned by the response! I estimate about 20 to 25 people contacted me. One lady just phoned to wish me well with my treatment; how nice. Others offered me the use of rooms in their houses, holiday cottages and annexes no longer needed. Some families offered to put us up free for the complete duration and I am still trying to decide what to do, knowing I have to reply to everyone. This morning, the lady who phoned to wish me well, phoned back to ask if I had found somewhere to stay yet, because she was concerned about me! A lovely man called Peter called, he was over 80 and his wife had died recently. He said that he had a spare bedroom and I was welcome to have it for as long as I wanted. He didn't want anything for it, but he warned me that he liked the football on a lot and he was a Spurs fan! I must write to the Cambridge News and let them know just what fantastic, well meaning people they have in their area.

I am well up to date on my work at University and hope that much of my surgery recovery time will be absorbed by the Christmas break. My course leader Fiona has been fantastic, assuring me that whatever it takes, she will help me get through first year. My mate Paul helps to update me on anything I miss, and ongoing, that might be rather a lot! But there's so much reading to do and work that can be done via the internet, that it shouldn't be too difficult to pull this off. The marks for first year do not count towards the final grade, so a 'pass' would be good enough, but sorry, not for me!

Happy Birthday to my daughter Luci who became middle aged on Wednesday. She's becoming a great photographer and has put out some really unique work. Proud of you Lucienne xxx. You know, you're over half my age now!

Breast Cancer or Prostate you have to check out Jane Plant. She is a professor and several years ago had to have one breast removed through cancer, but by doing some research herself, she came up with a solution which cured her. Her theories are very sound, so girls and boys, please follow this link and take ten minutes to absorb what she is all about. Chantal, Lucienne, Sasha, Maria & Sofia take note!

I handed in assignment one today, my first assignment of my 3 year degree!!! Here are a few shots that I took in the past month. Sorry about the last one, but it was that time of year!

In Ecology this week we had to identify each of 18 different species of Oak tree. I kid you not. Yes, like you I knew there was one type and had learnt earlier in the term that there was at least one other. But now that I know there are so many others, I am really not sure what to do with this information.

Today I switched to soya milk, have you ever tried it? I did years ago and thought Yuuuk! But when you are told that your particular type of cancer thrives on dairy produce, soya suddenly takes on a whole new flavour. I'm also down to 14 stone 7 pound (sorry, metric hasn't touched this guy yet!), that's the lightest I have been for decades. I put it down to what I eat now rather than anything sinister. Mentally, I feel that I am coping remarkably well, and I could put this down to many things but really it's a combination of support from some wonderful people close to me and the never ending amazement of the support from complete strangers.

I am being featured by two local newspapers next week, regarding the struggle I have had with the hospital system up here since I was diagnosed back in June. When the photographer showed up this morning, he asked if he could take a picture of me holding any correspondence from the NHS in Cumbria. Of course that wasn't possible, because they have never replied to any email or letter that I have ever sent. So he had to make do with a copy of Jane Plant's book, which was broadly titled, 'PROSTATE CANCER', making a good prop. He told me not to smile, after all, this was cancer that we were talking about and the readers wouldn't expect someone to look overly happy. I tried my best to grimace and be sincere at the same time!

I see my doctor at 4.30pm today, to get set up for what will be a bit of a struggle when I come out of hospital. Hopefully, by Christmas I will be through the worse and can look forward to starting radiotherapy shortly afterwards. I bought my Christmas cards today, will have to send those out next week or they may never leave the house. The cards are all the same; I love that. I remember the days when I would sit for hours choosing the appropriate card for that particular individual. Baby Jesus or the Holy Mother had to feature for my Catholic relatives, anything less would cut me out of the prayer list and you would have to light more candles than you could afford to get back in. Then a few joke cards for some of my more sinister friends, before speeding through a huge pile, trying to make up something different to say each time, finally ending up with just one card, and two people left on my list! Two people who I couldn't even remember who I had seen last, it was so long ago, but I had to make a choice of who to leave out.

This week, in return for all the research done by Sasha on cancer related stuff, she has asked me to research Buddhism for her, so that she can be less afraid of death. She's not so afraid of her death or mine anytime soon, but my eventual death when I am nearer 100, she assures me. Where do I start?

Thanks Chantal for all that stuff you sent through in your busy week last week, hopefully you'll get a bit of a rest this weekend. Why do the government make it so difficult when you have cancer, to find out what you are entitled to? Well, I guess I know!

Happy Birthday also to my good mate Paul at Uni who's photography is getting as good as mine!

Not sure when the next posting will be, just waiting for some news, but I would be very surprised if I still had no dates by this time next week; or would I :-) Have a great week everyone.....